Dave,
I am so sorry to hear you have had this terrible disease at such a young age. I was 68 two years ago when I had my cancer. I'm reading a lot of posts from young (to me, anyone under 60) people who have had major tongue surgery. I'm glad your mother is so caring to try to expand awareness of this form of cancer. I for one never heard of or was conscious of oral cancer until I got it. Since this is a less frequent cancer in the general population, it does not get the attention or research resources from the medical community.
However, the after effects are extremely debilitating as those on this forum can readily attest to. Problem is that these effects are not as outwardly visible to the public and many folks cannot fathom how that little oral cavity can make you feel after major surgery.
Gary, my heart goes out to you as you adjust to this "new" way of life. I can only thank good fortune that I was old enough when I contacted cancer to have the option to leave the work force (albeit unwillingly) without major disruption to that portion of my life. By the way, I joined the Support for People with Head & Neck Cancer (SPOHNC). For $25/year, I get a monthly newsletter. The March 06 edition had an extensive article by a NY otolaryngologist concerning tongue reconstruction. I'm thinking about writing him to get thoughts on what can be done with tongue flaps. This is because my otolaryngologist, while a fine surgeon, isn't very forthcoming about why my flap is sewn. Maybe its because I had pharynx and floor of mouth involvement but I'm guessing.
The prosthesis is OK but it only helps marginally in my opinion. Maybe I'm not using it right.
Carol L - I'm interested in what you had to say about having surgery on your flap. First time I ever heard of that. Its good you have enough real tongue left to control the flap somwewhat. Maybe there is some way to free up my flap (that NY doctor may have some ideas). Some movement would be better than none since one of the effects of this nonmobility is the need to carry many kleenex to get rid of moisture than build sup in my mouth frequently. If I don't, I tend to drool while starting to speak (embarassing to say the least).
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SCC rt lat tongue dx 9/03,surg 11/03 (T2N0M0);recur BOT &floor of mouth dx 1/04,surg 2/04 subtotal glossectomy, pharngectomy, forearm free flap,neck dissection, trach & PEG 12 hrs surg (T4N0M0), 36 rads 3-5/04; cellulitis infection 6/04 and 10/04, start therapy Nov 04 complete 12/05
